Discussions By Condition: Medical Stories

newly diagnosed

HiI was diagnosed with B12 and folate deficiency two weeks ago. I had a B12 injection on the day I was diagnosed and told to come back in a month for another one then i would have them every three months. I also was given 5mg of folic acid to take daily. We looked back over a B12 test I had back in 2005 and my level was 161 at the time I was just told this was normal although my GP says now it was the low side of normal.

I have had ME for 10 years and have recently gone downhill rapidly and felt as though I was dying so I went to a private clinic, it was them who asked my doctor to check my B12 levels he said there was no need but did it anyway and apologised when the results came back.

He did say I may not notice much difference from the jab yet due to my ME being so bad. I felt slight improvements in some ways but not much and it is now two weeks on and I feel like death again I even have a really bad sore red rash (ezcema) round my eyes too. I was struggling with the folic acid (tummy problems) so I stopped and started it and now the tummy problems are still bad but better so am just putting up with it.

I noticed everyone saying you should have loading doses to start with which I'm not getting so a week after the injection I took the jarrow 5000 sublingual tablets. I took one and then one 3 days later.

I noticed I was struggling with my breathing so just in case it was the B12 I haven't taken anymore.

I felt so bad and was so desperate yesterday that I went through the tests the private clinic recently did for my ME and saw that in my mitochondrial tests it said that potassium, zinc and magnesium were low in my mitochondrial membranes. I'm not sure if this suggests I am low generally? I have heard odd things about potassium being relevant and wondered if I should be supplementing with potassium. I have been prescribed loads of supplements from the private clinic but potassium and magnesium weren't among them.

Really I'm just wondering if I should be feeling this terrible (too many symptoms to list right now) or if I should just assume its the ME and the B12 just isn't going to help me much.

I am unsure of the cause of the B12 deficiency. My grandad had pernicious anaemia so think GP is assuming that. I am also concerned I may have coeliac disease but I suddenly started having allergic reactions to wheat almost a year ago so stopped eating it (GP agreed, didn't mention testing for coeliac) so now a test will be useless as I haven't eaten gluten for so long. Don't think there is any other way of diagnosing??

Sorry for the long post just so confused and ill and not sure where to turn!!